Wednesday, January 28, 2015

PHA Accredits 11 New Pulmonary Hypertension Care Centers

When I came to PHA in 1999, there were about 100 doctors in the U.S. treating pulmonary hypertension. Today there are more than 10,000. While that growth is good news, it’s also a call for clear standards to improve quality of care for patients. That is the purpose of PHA’s new PH Care Centers (PHCC) accreditation program. The program was launched on Sept. 27, 2014, after three years of organization and development by committees of leading medical professionals.

Today's news is that PHA recently accredited 11 Pulmonary Hypertension Care Centers, bringing the total number of PHCCs to 17, in a program that seeks to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension. This includes promoting improved diagnostic and treatment standards in the field of PH, while creating unique partnerships between accredited centers and PHA.

PHA is still a relatively small disease organization. For us to now be accrediting PHCCs is a great accomplishment. I believe this comes from our unique relationships with medical professionals and patient populations working together to find a cure for this devastating disease. We have come a long way in changing the trajectory of this disease and improving the lives of patients in the race for a cure.

These first phases of accreditation are open to centers applying as Comprehensive Care Centers (CCC). We expect that to result in more than 90 applicant Centers. (We are currently over 35.) In 2016, applications for Regional Clinical Programs (RCP) will begin to be accepted as RCP criteria requires collaboration with regional CCCs. By linking accredited CCC and RCP centers together, the program will improve knowledge among professionals and patients about where to seek quality care.

PHCC accreditation signifies that a PH program has demonstrated a dedication to making a proper diagnosis and has the capacity to appropriately and comprehensively manage PH patients through a set of criteria. Both CCCs and RCPs will be accredited by PHA after undergoing a thorough evaluation and satisfactorily meeting the respective standards set forth in the PHCC Criteria. In accordance with the program’s vision, all PHA-accredited PHCCs will be expected to uphold the principles of delivering appropriate and effective care, offering research participation opportunities and providing appropriate support to PH patients.

To see the full list of nationwide accredited PHCC Centers of Comprehensive Care, please visit our website.  In looking at this information, it's important for everyone to understand that this process is just beginning. Many excellent Centers have not yet been reviewed or begun the complex application process.  It will take well over a year for PHA to work through national-level accreditations, after which Regional Center accreditations will begin.

The PHCC online application portal was also launched this month with high interest in the program resulting in a steady increase of application submissions. Many site reviews are being scheduled for the coming months. Centers interested in applying can access the online application at the PH Care Centers Site Application Portal.

For additional information on PHCC and the application process, go to: or email

Please join me in congratulating the newly accredited centers. With the hard work and dedication of these Centers, the diligence of the medical community and patient population to get the best care possible, and the work of our staff at PHA to coordinate initiatives and raise awareness about PH, we are closer to a cure than we have ever been.

Wednesday, January 14, 2015

Defining the New Normal

I’ve been interacting with PH patients for a long time – about 15 years now – so you might think I would no longer be amazed by the strength, creativity and perspective they bring to their disease. But I am. Case in point: Colleen Brunetti, the first Generation Hope member to serve on PHA’s Board of Trustees, has published an honest and thought-provoking book about her experiences living with PH, Defining the New Normal: A Guide to Becoming More than Your Diagnosis.

Writing a book is no small chore, and in addition to living with PH, Colleen is a wife, mother, certified holistic health coach, teacher and fundraiser. Yet she made the time and found the inspiration to produce this book which takes those with all forms of chronic and critical illness step-by-step through the areas of self-care that Colleen believes are crucial to patients’ overall well-being. Learn more about Colleen’s motivation to write the book and how you can get a copy of your own.